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Death Doctors Disease. > Death and Dying 1950s > Flashcards

Death and Dying 1950s Flashcards

1
Q

How were attitudes to a ‘good death’ changing in the 1950s?

Four shifts

Clark

A

1) shift from ‘idiosyncratic anecdote to systematic observation’
2) new concern with ‘dignity and meaning’ of terminal diagnoses
3) passive (‘there is nothing more we can do’) < active (we can’t save patient, but can we help them?)
4) recognition of the interdependency of physical-mental suffering (Cicely Saunders, total pain)

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2
Q

Countervailing tendencies in medical attitudes towards death

Clark

A

At the same time as new acceptance of terminal conditions…

1) ‘futile treatments’ not benefitting patient/not working
2) ‘widespread assumption in society that every cause of death can be resisted, postponed or avoided.’

Friedemann Nauck: death in the hospital an ‘industrial accident’

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3
Q

Statistics on hospital involvement in end-of-life care in the UK

Clark

A
  • 25% of beds taken up by patients in last year of life
  • 60% of deaths occur there
  • 37% in ICU die within 6 months
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4
Q

What is the focus of palliative care?

Clark

A
  • Moving palliative care ‘upstream’ in the disease progression
  • making palliative care available for all, not just cancer patients

-

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5
Q

What are some broad criticisms of the new medicalisation?

Clark

A
  • overemphasis on ‘physical’ symptoms ‘at the expense of psychosocial and spiritual concerns’
  • suffering ‘a problem to be solved’
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6
Q

Palliative care - a ‘postmodern speciality’?

Clark

A
  • Concerned with condition, not pathology
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7
Q

Palliative care and the good death

Clark

A
  • ‘the shift from “terminal” to “palliative” care has brought about a diminished emphasis on the good death
  • “Mainstreaming palliative care into the central functions of the healthcare system produces a greater concentration on the problems of the living than the dying population”
  • ‘quality of life>quality of death’
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8
Q

Contextualising Illich’s critique of medicalisation

Clark

A
  • ‘At the time Illich was writing, the mid 1970s, a much more unitary and optimistic view of medicine was in evidience than exists today, and this was a basis for his critique
  • n.b. it is true than medicine has become more divided into micro-specialisms
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9
Q

Clark’s judgements on the Medicalisation of death

Clark

A

palliative medicine has contributed to the medicalisation of death, but for patients this has alleviated pain and suffering

‘inappropriate to see this as an example of either medical imperialism or the world we have lost’

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10
Q

Cicely Saunders, the early vision for a hospice and its purpose

Saunders, Cicely, ‘The Evolution of Palliative Care’

A

somewhere more suited to the need for symptom control and, above all, where there was a chance to come to terms with the situation more easily than in a busy surgical ward.

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11
Q

Long history of hospice care

Saunders, Cicely, ‘The Evolution of Palliative Care’

A
  • late 4th century, Roman matron operates hospice for sick and destitute
  • 16th century England, monasteries stop taking in sick/pilgrims after dissolution
  • Early hospitals would not take incurable as it was against their hippocratic oath
  • Mme. Jeanne Garnier, Lyon, 1843. opens what C. Saunders considers to be first ‘modern’ hospice
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12
Q

First hospice in the UK?

Saunders, Cicely, ‘The Evolution of Palliative Care’

A
  • Irish Sisters of Charity: Dublin (1879), St. Joseph’s Hospice in Hackney, 1905
  • 600/700 patients annually, home care launched with Macmillan in 1975
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13
Q

Cicely Saunders’ concept of ‘Total Pain’

Saunders, Cicely, ‘The Evolution of Palliative Care’

A
  • ‘all of me is wrong’ - patient, 1963

- ‘constant pain needs constant control’

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14
Q

When did the NHS develop hospital teams?

Saunders, Cicely, ‘The Evolution of Palliative Care’

A

1977, St Thomas’ Hospital, London

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15
Q

What does Cicely Saunders list as some of the key qualities of hospice care

Saunders, Cicely, ‘The Evolution of Palliative Care’

A
  • symptom control
  • a multi-professional team
  • home care
  • peripatetic hospital teams
  • Maximising the potential for the patient’s quality of life
  • bereavement care
  • spiritual needs
  • research and education
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16
Q

Attitudes to palliative care in the UK?

Saunders, Cicely, ‘The Evolution of Palliative Care’

A
  • The patients’ carers were asked ‘Looking back now and taking the deceased’s illness into account, do you think she or he died at the best time — or would it have been better if she or he had died earlier?
  • A total of 28% of the respondents, with a bias towards the younger carers, and 24% of the deceased expressed the view that earlier death would be, or would have been, preferable.
  • However, only 3.6% were said to have asked for euthanasia at some point during their last year c.f. to 70–80% for public opinion polls
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17
Q

Judge Devlin on shortening life with treatment

Taken from trial of Dr. John Bodkin Adams, accused of murdering patient with morphine OD to inherit property

Saunders, Cicely, ‘The Evolution of Palliative Care’

A

If the first purpose of medicine, the restoration of health, can no longer be achieved, there is still much for a doctor to do, and he is entitled to do all that is proper and necessary to relieve pain and suffering, even if the measure he takes may incidentally shorten life.

The cause of death is the illness or the injury, and the proper medical treatment that is administered and that has an incidental effect on determining the exact moment of death is not the cause of death in any sensible use of the term.

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18
Q

WHO definition of palliative care

Saunders, Cicely, ‘The Evolution of Palliative Care’

A

Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families.

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19
Q

Evidence that palliative care should branch beyond cancer patients

%

Saunders, Cicely, ‘The Evolution of Palliative Care’

A

Regional Survey of the last year of 3960 patients who died in the UK showed that 16% of people with other diagnoses suffered many of the same symptoms, often for longer periods

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20
Q

The mission of Saint Christopher’s Hospice: quote

Saunders, Cicely, ‘The Evolution of Palliative Care’

A

‘you matter because you are you and you matter to the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die’

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21
Q

The growth of palliative care in cancer treatment - Clark, quote

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A

‘…from the margins of oncological practice to the very centre of modern cancer care.’

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22
Q

Cicely Saunders’ attitudes towards euthanasia

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A

A lifelong opponent of euthanasia, she pressed tirelessly for the proper relief of suffering without the hastening of death.33

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23
Q

Early Research at Saint Christophers

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A

Research at St Christopher’s Hospice began even before the first patient was admitted. Parkes built up a cohort of patients over time, consisting of 276 patients who had died from cancer in two London boroughs, 49 of whom were still under active treatment at the time of death. He discovered that many of the patients had died with unrelieved pain, whether the patient died in hospital or at home.

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24
Q

Growth of palliative care in Britain at the end of the 20th century

Between 1982 and 1996 the number of hospitals with either a multidisciplinary palliative care team or a specialist palliative care clinical nurse grew from….

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A

five to 275

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25
Q

Macmillan organisation and its involvement in palliative care

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A
  • founded 1911
  • 1970s expansion:
  • 1990s there were over 1000 specialist Macmillan nurses working in palliative care in the UK, about 400 home-care teams, and over 200 day-care and 200 hospital-based services,
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26
Q

Marie Curie Memorial Foundation

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A
  • founded 1948
  • nursing homes, domiciliary nursingservice
  • lab research
  • nursing homes –> specialist palliative care centres
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27
Q

Cancer pain

How was it viewed before and after the advent of palliative care?

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A

Before
-pain is an inevitable, uncontrollable consequence of cancer

  • International Symposium on Cancer Pain, 1978 * : doctors did have the knowledge to alleviate suffering, restricted by mismanagement and opioid restrictions

1982, WHO Programme for Cancer Pain Relief, advocated rolling back restrictions on opioid use –> opioid use increases in ten industrialised countries.

–> Recognition increased that curative care and palliative care are not mutually exclusive, and that as long as curative oncological treatment is out of reach for many patients in the developing world, then the allocation of resources should shift towards a greater emphasis on palliative care.57

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28
Q

International collaboration on palliative care?

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A

In 1976, the First International Congress on the Care of the Terminally Ill was held in Montreal, Quebec, Canada

International Hospice Institute, which, in 1999, became the Inter- national Association for Hospice and Palliative Care. The European Association for Palliative Care was formed in Milan, Italy, in 1988,

29
Q

How far ahead of other countries was the UK in founding St Christopher’s?

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A

After the foundation of St Christopher’s Hospice in the UK in 1967, 10 years elapsed before the first services began to appear elsewhere: Sweden (1977), Italy (1980), Germany (1983), Spain (1984), Belgium (1985), France (1986), and Netherlands (1991)

30
Q

National Institute for Health and Clinical Excellence guidance on supportive and palliative care

palliative care in oncology patients: key recommendations

Clark, D., ‘From Margins to Centre: A Review of the History of Palliative Care in Cancer’,

A
  • people affected by cancer should be involved in developing cancer services;
  • there should be good communication and people affected by cancer should be involved in decision making;
  • information should be available free of charge;
  • people affected by cancer should be offered a range of physical, emotional, spiritual, and social support;
  • and those with advanced cancer should have access to a range of services to improve their quality of life, including support for people dying from cancer, with a trained workforce to provide these services.
31
Q

‘The tamed death’ and ‘the wild death’ - Phillip Aries

Glaser & Strauss (1965; 1968; 1971)

A

TAMED
- the now lost ‘natural
order’ of dying and death, the dying person acted as the manager of ceremonies,
presiding over his or her last days of life, conducting farewells, giving blessings
and seeking pardons, and approaching the end of life in ways he or she had
witnessed since childhood.

  • This good death was a public event
32
Q

Aries’ criticisms of hospitals in the dying process - the wild death

Glaser & Strauss (1965; 1968; 1971)

A

‘The conditions of dying and death in contemporary society - particularly in hospitals - are seen by Arie`s as an inhumane and solitary dying, with death as the object of a
clandestine, shamefaced voluntary decision made by the doctors and the
family.

. The lives of dying people in hospital contexts were characterised by
experiences of meaninglessness, isolation, powerlessness and loss of control.
The dying person’s autonomy and opportunities were overridden by the hospital
staff and the organization of work. This dying and death was Arie`s’ (1974) ‘wild,
savage death’, the antithesis of the ‘tamed death’ of the pre-modern era.

33
Q

‘The dying trajectory’

Glaser & Strauss (1965; 1968; 1971)

A

The concept of ‘the dying trajectory’ was introduced
by Glaser & Strauss (1965; 1968; 1971) who gave an image of the ‘good’
or ‘appropriate’ death in which all concerned had both the time for and quality
of interactions during the dying process to reach a state of open awareness.
Those concerned were able to negotiate and manage critical events that marked
changes in the dying person’s status, their interactions with others, and shared
awareness of their condition.

34
Q

Evidence of changing attitudes to death and dying in mid-20th century: On Death and Dying (Kubler-Ross, 1969)

A

On Death and Dying (Kubler-Ross, 1969) documented powerfully the
unmet needs of dying people and their families. It led to a remarkable increase
in the awareness by professionals of the experiences of dying people and assisted
many in their struggles to understand and support a dying person

35
Q

Death with acceptance

On Death and Dying (Kubler-Ross, 1969)

Hart et al., ‘Whose dying? A sociological critique of the ‘good death’

A

This death with acceptance
was not a happy death, but a state and a final stage wherein the denial, anger,
depression and emotional struggle to resist the ending of life had been resolved,
‘unfinished business’ had been attended to, all necessary words spoken, preparations
and farewells made; a peaceful death could then be expected to follow

36
Q

The good death and free choice

Hart et al., ‘Whose dying? A sociological critique of the ‘good death’

A

The choices and opportunities of dying people are powerfully shaped and
constrained by those caring for them. This is not to suggest that those caring for
the dying are individually responsible for this new form of social control over the
lives of dying people. Rather, it is to challenge the good death ideology and to
illuminate how and by whom this ideology is sustained.

37
Q

What problems to Maggie’s centres seek to alleviate?

Marek H. Dominiczak, Illness and Culture:
Maggie’s Centres

A

self-image issues caused by hair loss or weight changes,

the frustrating lack of mental and physical energy,

the forcing of major change in lifestyle habits after a cancer diagnosis,

and the necessity to spend time in healthcare
spaces

38
Q

Who was Maggie K. Kencks, and what was her vision for Maggie’s centres?

Marek H. Dominiczak, Illness and Culture:
Maggie’s Centres

A

Maggie Keswick Jencks—a writer, gardener, and designer who died in 1995—as related by her husband, architectural critic and author Charles Jencks

Having to deal with cancer in conventional hospital
surroundings inspired Maggie Jencks

Although such a center
would be located close to a hospital, it would be
planned and furnished according to noninstitutional
aesthetics, thereby adding a measure of informality to
the surroundings

39
Q

Maggie’s centres, as described by Charles Jencks

Marek H. Dominiczak, Illness and Culture:
Maggie’s Centres

A

“like a house which is not a home, a collective

hospital which is not an institution, a church which is not religious, and an art gallery which is not a museum.”

40
Q

Dominiczak, The siginificance of Maggie’s centres,

Marek H. Dominiczak, Illness and Culture:
Maggie’s Centres

A

The Centres are
now part of the cultural landscape because of their architectural
uniqueness and thus speak to the population
at large. They convey the message that illness does
not need to mean separation from the cultural
mainstream.

41
Q

Teaching medical students about death and dying

A

Wilkes report 1980 recommends it’s added to the curriculum

In 1993, the
Association for Palliative Medicine in Great Britain
and Ireland3 produced its curriculum for medical
students and practising doctors

‘What is the
greatest extent to which the topic of dying, death and
bereavement is represented in your curriculum?’

–> In the 11 programmes
(46%), such material was integrated across the curriculum in various ways(but not tackled directly)

The mean number of taught
hours was 20. This compares with overall means of 6 hours in 1983 and 13 hours in 1994.

Contact with terminally ill patients in class or one to one

—–> we believe, the provision of teaching has moved away from the academic disciplines
of psychology and sociology towards those
involved in the practicalities of caring for people who
are dying,

—> The finding from this study that all medical schools with clinical teaching are now providing teaching about palliative care to all their medical students is heartening.

42
Q

Carel, ‘The Cry of the Flesh’, on the nature of illness and living in the present with an awareness of one’s own mortality

A

(In 2006, Carel was diagnosed with lymphangioleiomyomatosis (LAM), a rare and progressive lung disease with a prognosis of about ten years from the onset of symptoms. She describes the overwhelming impact of this world‐shattering diagnosis on her life.)

‘life‐transforming process’

Memories of past abilities can often be very painful for the ill person, and the future may represent various anxiety‐inducing possibilities. For this reason, the present has become intensely precious to her, and she describes how this new appreciation of the present moment has enriched her life. Happiness is not dependent on objective standards of good health. According to Carel, the good life is compatible with illness if we change our attitudes to time, mortality and well‐being.

43
Q

I. Illich, Limits To Medicine: Medical Nemesis: The Expropriation of Health (London: Marion Boyars, 2011), 8.

A

For Illich, medicalization reached its climax after the Second World War when, for the first time, most deaths occurred in medical institutions.

Patients as technical problems: Callousness became routine, justified as ‘scientific detachment’ in 20th c

decline of ‘art of suffering’ = difficulty interpreting and thus handling their pain.

44
Q

Clark and others, Public Health England, ‘Recent trends in place of death in England’ (2016).

A

by 2016, in England, deaths in hospices were nearly as common as those in hospitals.

45
Q

Stats on Maggie’s centres

A

17 British centres have opened since 1996, receiving around 200,000 visits in 2016

46
Q

Cicely Saunders research against opioid restrictions

A

In 1963, Saunders argued against this opposition to prescribing opiates, based upon observations of 900 patients, insisting that ‘tolerance and addiction are not problems’.

47
Q

A modern hospice pre-dating saunders?

HUMPHREYS

A

It was with the foundation of Our Lady’s Hospice for the Dying in Dublin in 1879 that use of the term ‘hospice’ firrst came to be associated specifically with care
of the dying in the British Isles.

48
Q

Saunders and Kastenbaum (1999), on the growth of hospice

A

Saunders and Kastenbaum (1999), the growth of hospice was a reaction to a number of trends. First, technology-driven medicine focused on cure, seemingly abandoning those who were no longer responsive to treatment. Second, hospice resonated with two other themes of the era—consumerism and return to nature. Both trends converged on the idea that individuals could create alternative, more natural organizations, where persons could take control of their lives—and their deaths.

49
Q

Kübler-Ross’ On Death and Dying. - the five stages of death

A

Kübler-Ross posited that dying persons went through a series of five (now famous) stages—denial, anger, bargaining, depression, and acceptance

50
Q

Future trends in dying?

Historical and Contemporary Perspectives on Dying
Authored by: Kenneth J. Doka

A

as the population ages, it is not unusual that many patients will have multiple chronic conditions at end of life.

Medically it means that multiple conditions are being simultaneously treated, making both treatments complex, and the dying trajectory less predictable. This emerging medical reality has led to an interest in concurrent care—or medical treatment where palliative care is offered concurrently with life-extending treatment.

51
Q

Why were hospices initially founded?

HUMPHREYS

A

The establishment of homes for the dying was, in part, a response to the lack
of medical and nursing provision for the dying poor in the late nineteenth
century.

52
Q

How did provision of welfare for the dying vary in modern england?

A

The wealthy middle and upper
classes were, for the most part, nursed at home, especially if they were in the
advanced stages of an illness

For the respectable or deserving poor there
were the voluntary hospitals, but many of these tended to give priority to
patients who were considered useful for the research and education of medical
practitioners. Ofécially incurables and the dying were debarred from the voluntary
hospitals

53
Q

Pauper’s funerals

Humpherys

A

. The celebration of death was a rite deeply entrenched within
Victorian society and among the working classes was perhaps the single most
important event in a person’s ‘life’ (Curl, 2000).

In an age in
which respectability was as much demonstrated in death as it was in life, the
pauper grave represented the ultimate degradation because it was anonymous
and burial was carried out with a minimum of ceremony

54
Q

In 2004, there were how many inpatient units in the uk, and what % of them were NHS?

A

In 2004, there were 196 inpatient units in the UK, consisting of 2730 beds, albeit just 19% of which were within the NHS,

55
Q

What association exist for palliative care in the UK, and when was it founded?

A

Association for Palliative Medicine for Great Britain and Ireland - 1986

56
Q

When did Palliative care become a sub-speciality/speciality of medicine?

A

1987, Palliative Medicine is established as a sub-speciality of general medicine

1994, made speciality

57
Q

When did the UK forum on hospice/palliative care become operational?

A

The UK Forum for Hospice and Palliative Care Worldwide became operational in 2002,

58
Q

Illich on the ‘medical nemesis’ (1974)

A

transforming pain, illness, and death from a personal challenge into a technical problem,

loss of autonomy

59
Q

Illich on man’s denial of death

A

Cosmopolitan medical civilisation denies the need for
man’s acceptance of these evils. Medical civilisation is
planned and organised to kill pain, to eliminate sickness,
and to struggle against death.

The ability to cope with autonomy is fundamental to his health

The true miracle of modern medicine is diabolical in taking autonomy

60
Q

Illich on the modern hospital

A

a new kind of suffering—anaesthetised and solitary

survival in a world-wide hospital ward.

61
Q

Kellehear (2005) on how past western societies treated death

A

e. Kellehear (2005) notes that, in the past, discussing and planning for death and dying was routine for families and communities

62
Q

BSA survey: attitudes to death and dying

http://www.bsa.natcen.ac.uk/media/38850/bsa_30_dying.pdf

A
  • 70% felt comfortable talking about it
  • 85% would want to know if terminally ill
  • Only 7% wanted to die in Hospital, 4% in a hospice!
  • 67% wanted to die at home
  • But 60% changed their mind if dying at home meant the absence of medical support
  • People who wanted to die at home prioritised being with the family; people who preferred to die in hospital prioritised being pain free.
63
Q

The ‘tudor accidents’ project at Oxford University.

A
  • Steven Gunn research follows those who died in workplace accidents/accidental deaths in Tudor England
  • Account also for numbers who perished in war and by infectious disease - was this a ‘good death?’
64
Q

Bronski on death

A
  • ‘Death…is shunted to the bottom of the agenda; avoided until it can be avoided no more. It is the dirty little secret that calls up euphemisms and embarrased looks…death always happens to other people…On some level everyone knows that death is inevitable, but few people are eager, or equipped, to deal with the fact.
65
Q

Watney (1989) on UK inaction

A
  • AIDS has not yet been widely taken up as a political or cultural issue, in spite of the fact that the situation of people with AIDS here is in many ways as bad as in the United States.
66
Q

Cellmates, important stuff

A
  • Palliative care GOOD
  • Rose says that it’s helpful to have a doctor with an ‘intuitive bedside manner’, ‘free from egos and jargon’
  • John had a agreed to return to the hospice, but is resistant to return when the time comes, preferring to be at home –> Not a rejection of dying in a hospice, but an equation of the hospice with death
67
Q

Who wrote ‘historical and cultural variants on the good death?’

A
  • WALTER
68
Q

Name two books on dying in modern england, and quote one of them?

A
  • Beliefs and the Dead in Reformation England, P. Marshall
  • Birth, Marriage and Death, D. Cressy
  • Cressy: ‘death and internment were meaningless if shorn from their religious significance.’

Death Doctors Disease. (6 decks)

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